A group of families using our wonderful homeschooling program that makes it possible for this chronically ill mom to still bless my children with a quality, Biblically-grounded education even when we are "bed-schooling" many days.

Thursday, April 22, 2010

I've tried to describe to those closest too me what it is like to try to drive, how draining it is even to go a short distance and how fatiguing the sensory overload can be. I came across this article today that explains it all pretty well.

I didn’t drive for the better part of the first 4 years I was sick. Almost 20-years in I have made a total of 1 drive 45 minutes from home, 2 drives 90 minutes from home (and these both several years ago at my most healthy season), but typically have to keep everything within a half hour radius of the house (on my best days) or someone else has to drive. I too have learned when I just simply have to hand over the keys and cannot safely navigate a vehicle even for a 5-minute drive. It is a constant fear that I will spend too much of my mental/physical reserves getting myself somewhere or use up more than planned while I’m there, then not have the energy to get myself safely back home again.

I also have trouble plotting out how to get from point A to point B even if I know the area well. I’ve gotten lost many times and often have to backtrack or end up taking the most lengthy/complicated route somewhere because I have to keep re-adjusting for turns I forgot to make or exits I passed by, etc. My husband bought me an in-car-navigator for Christmas a couple of years ago and it has been very helpful, but sometimes I even have a hard time following those directions.

Wednesday, April 21, 2010

I always so appreciate it when someone takes the time to write a positive review for Hannah's Hope and share about the book on her blog. Over the years I've been so blessed by some amazing word-of-mouth promotion. But I've also "learned" some funny (to me anyway) things I never knew about myself.

Dear Dr. McClure:On behalf of the Whittemore Peterson Institute in Reno, Nevada (“WPI”), I am writing you today to ensure that there is direct communication between WPI and your research team. You may share this letter with others that you deem appropriate, and I will do the same by sharing this letter with other interested parties in both the United States and the United Kingdom.

On January 6, 2010, you reported in PloS One that you failed to detect xenotropic murine leukemia virus-related virus (“XMRV”) in ME/CFS patient samples. In that publication you reported the following conclusion, “[b]ased on our molecular data, we do not share the conviction that XMRV may be a contributory factor in the pathogenesis of ME/CFS, at least in the U.K.” You subsequently made the following statement in your commentary regarding the Netherlands study in the BMJ, “….van Kuppeveld and colleagues provide the additional information reported at a conference last year that the patients in question came from an outbreak of chronic fatigue syndrome at Incline Village on the northern border of Lake Tahoe in the mid-1980s.”

This statement about the origin of the 101 patient samples is untrue. The patients in the Science study were well defined in the paper as having CFS by the Fukuda and Canadian consensus definitions of ME/CFS. More importantly the patient samples did not come from the “Lake Tahoe outbreak” as you assert, but rather from patients who had become ill while living in various parts of the United States.

We would also like to report that WPI researchers have previously detected XMRV in patient samples from both Dr. Kerr’s and Dr. van Kuppeveld’s cohorts prior to the completion of their own studies, as they requested. We have email communication that confirms both doctors were aware of these findings before publishing their negative papers. In addition, Dr. van Kuppeveld asked for and received reagents and a positive patient sample to determine if his testing procedures could in fact detect XMRV in a positive blood sample before he published his paper. We wonder why these materials were not used in his study which also failed to detect XMRV.

One might begin to suspect that the discrepancy between our findings of XMRV in our patient population and patients outside of the United States, from several separate laboratories, are in part due to technical aspects of the testing procedures. To help identify the possible reasons for the discrepancies in detection of XMRV, WPI would like to send you known positive patient samples with controls, from the United States in an appropriate number, along with WPI reagents, so that we can help you determine whether your testing methodologies will accurately detect XMRV in a clinical sample of blood. In addition, WPI would be willing to test a like number of samples from your patient cohort to see if our researchers can detect XMRV in those samples.

This critical exercise would help resolve the question of whether you are using all of the appropriate techniques necessary to detect XMRV in a patient’s sample. If your tests are able to detect XMRV correctly in the known positives, then the debate can appropriately center on whether we can identify the differences in the patient cohorts which have been the subject of various studies. It is in this systematic manner that we all may help to move the science forward; instead of continuing to debate whether or not ME/CFS patients in Europe are infected with XMRV.

It is also important to note that our initial study was not intended to prove causality of ME/CFS, but to report a significant association between patients who had been diagnosed with ME/CFS and XMRV. We believe that there exists compelling evidence to spur additional scientific review, especially in light of the fact that our team of researchers also discovered XMRV in the blood of 3.7% of our non contact controls.

As a note of personal clarification, as I am one of the original XMRV-positive patients reported in the Oct. Science paper, I've had many questions about when/where I became ill. I am US born, but spent about 9 years of my childhood overseas. The more I learn about retroviruses and think back through my own medical history, the more I suspect I've probably had X at least since I was 8, living in Japan, though some strange medical symptoms can be traced back even earlier and could stem to infancy in Michigan or even my 1972 birth in Oregon (though I lived there just three weeks).

Since I didn't "crash" hard with what was eventually diagnosed as CFS until I was 18 and living in southern CA in 1990, I "acquired CFS" here in the US. There is obviously no way to prove how long I've carried XMRV or even in what country I became exposed, but I would be considered to be "from southern CA" when it comes to CFS onset, though I've lived across the US and in various parts of Asia. Since I never lived anywhere longer than two years, sometimes moving much more frequently, my continent of contamination is utterly unknown.

I have now lived in Reno, about 45 minutes for Incline Village, for the past 12 years. I had never even been in the state of NV (other than driving through southern Vegas and spending about 8 hours overnight in a motel on the way to somewhere else while in high school) until after my CFS diagnosis, so I am certainly not part of the Incline Village outbreak.

Friday, April 9, 2010

I think I'm going to put my "Fiction Fridays" feature on hold for a few weeks as I read back through your previous review comments and decide where I'm headed from here. :) Thanks for all the great feedback. It was exciting to see how popular those review posts seemed to be.

My body's telling me it's got to be a quiet day at home today. My kids all seem to be trying to fight off a little something too, so I think we are going to do a lot of reading and have a fairly light school day. Looking forward to a weekend with my sweet hubby home before he heads to ChirpTweet next week.

Since this blog is focused on both motherhood and infertility, I had to share another sweet blog I stumbled across this week. Me vs. You is written by two sisters, one dealing with infertility (now finally a mom to one) and the other highly fertile (5 kids in 7 years). It is a reflection of their journey through sisterhood together as they each saw their families unfold in such different ways, wanting to continue being deeply devoted sisters, yet the pain of circumstances often getting in the way. They take a unique approach with their blog, inviting questions from their readers, then each sister answering from her own perspective. I obviously haven't read every post in the extensive history there, but was really impressed with the loving and candid advice I did have a chance to read. (And it didn't hurt my feelings at all when the infertile sister suggested Hannah's Hope as a resource for her readers this week, thus triggering my Google alert and allowing me to find their blog in the first place. ;) )

I bought myself a little treat last week and am enthralled by the beautiful pictures, along with a surprising amount of information, packed into In the Footsteps of Paul by the photographer behind the movie, "The Passion," Ken Duncan. A feast for my eyes and refreshment for my soul. :) What a joy to see my own book on Paul continue to take life over this past week as well.

In other news, our taxes are finally filed!!! Yeah! (I knew you couldn't survive another minute without knowing that vital piece of information. But it was a BIG DEAL to me, and has been a huge focus in our household these past several weeks, thus noteworthy for this blog. ;) ) It was nice to finally see all those medical expenses from 2009 do us some good in the form of tax deductions.

Wednesday, April 7, 2010

Honestly don't know anything about what this day is about, but the owner of Affordable Mineral Makeup is marking it by offering a 12% discount off your entire Affordable Mineral Makeup order today and tomorrow (through 11:59 Thursday evening) at www.InnerBeautyGirls.com with coupon code:worldhealthday

Don't want to miss future discount codes? Please follow me at the InnerBeautyGirlz blog! (I don't often mention my makeup business here as I have a whole blog just for beauty tips, tricks and sales.)

Tuesday, April 6, 2010

With yet another yeast infection raging (yes, I was weak and indulged in a few pieces of Easter candy over the weekend, and woke up "paying for it" by Monday), I've been investigating food choices that I might actually have the energy to implement. Many people have encouraged me to try Candida diets, gluten-free diets and many, many other diets. While I fully believe there's probably great merit to many of these suggestions, the bottom line is that if that's what it's going to take to "get better" (and with a retro-virus, I honestly believe there's a lot that can be done to make healthy choices, but currently nothing that's going to make a dramatic difference) that I simply don't have the energy to do what is needed to get more energy.

As a chronically ill mom I'm thankful to get something relatively nutritious to the table for my kids three times each day, so yes, I do rely on prepackaged, canned, frozen, and otherwise processed food much more than I would like. But am thankful to have these options that make feeding my family possible at all. Taking on "special projects" like restrictive diets simply isn't a realistic option for me unless someone wants to volunteer as my personal chef.

I have tried various forms of "detoxing" in the past and typically have terribly problems like nightmare migraines (pain indicating symptoms of brain aneurysm), hives, nausea and sometimes even breathing issues. But every "detox" I've tried in the past included herbal supplements and since I am sensitive to so many chemicals, even natural ones, I've long suspected dextoing herbs to be allergens for me.

Today I came across the Brown Rice Diet on one of my follower's pages (thanks Amy!) and am wondering if this is one I might actually be able to handle? No herbs involved, healthy, natural foods that are easily within the parameters of things I enjoy eating and can prepare with relative ease, and probably all things I can prepare for my family without having to make a full second set of meals for myself. Giving up prepared foods will still be a stretch for me energy-wise, and no bread or dairy will limit some meal options (we don't do milk, but do cheese and yogurt, along with a fair number of sandwiches), but I think this one could be workable.

Anyone ever try this or something similar? Would love to hear your stories and input.

Saturday, April 3, 2010

It's been a long day, a long week. Taxes are finally all but filed (we have one more piece of information to track down before hitting "submit") and physically I wasn't sure I was going to be able to push myself through the day. With throbbing hands and arms after a half hour of putting R.'s hair up in curlers, the kids' bedtime rolled around at 8 and I wanted nothing more than to crawl in bed myself, but we hadn't begun preparing Easter baskets yet, so I knew that wasn't an option.

Filling eggs, hiding eggs, setting up baskets, it was tempting to see the task before us as overwhelming to this pair of parents fighting aches, pains and exhaustion, but the next two hours turned out to be such a joy. I remember too many years of longing for the chance to be given the option of trading sleep for preparing late night surprises. I ache for my friends still in the journey as I reflect on so many Easter mornings I met with tears as adorable children arrived at church in Easter finery. I remember too many years when I couldn't wonder in Resurrection because the sting of the grave was still much too personal and too close. (If this is where you live right now, please know you are in my prayers, many of your specifically by name tonight!)

It's times like this when I'm most thankful for infertility, that the journey to parenthood gives me perspective on the privilege we've been given. Once baskets were filled and eggs were hidden, my heart was overflowing and while still physically exhausted, I just longed to make it a memorable morning for my family, so I pulled frozen cinnamon roll dough out of the freezer and got a beautiful springtime breakfast table all set, complete with flowers that I know will make our daughter's heart sing.

And tomorrow will be a very special day for our family in more ways than I had ever imagined. Not only will we together be celebrating Christ's victory over the grave, but R will be joining us in communion for the very first time and Little J. will be attending church for the first time as a new Believer! Yes, on Wednesday, March 31, our sweet 4-year-old became no longer just our physical son, but now our spiritual brother as well, asking Jesus to forgive his sins!!!

Oh grave where is your victory? Oh death, where is your sting? Praising God for turning our mourning into gladness and giving us the gifts of our miracles babies, along with His only Son!

----Editing this on Wednesday morning to add a link to Holley Gerth's You're Delightful post as it is such a beautiful tie-in, written from the perspective of one still jouneying primary infertility.

Friday, April 2, 2010

I won't typically "review" a book that I haven't personally read cover-to-cover, but as I'm running low on my supply of fiction fertility-related titles to share with you, I'm going to take a leap of faith and borrow a review from a trusted source, the Stepping Stones Christian infertility ministry. I do intent to eventually pick up The Long Awaited Child by Tracie Peterson, but just haven't had the chance yet.

From the Stepping Stones bookstore review: "Novelist Tracie Peterson has written or co-written over 35 novels. This novel is the dual story of a woman, who wants nothing more than to be a mother, and a frightened pregnant teen, who wants nothing more than to run away from that responsibility. Be ready for some tears as you read how each of them overcomes past heartache to give the other her heart's desire."

As I draw to the bottom of my pile of infertility / loss fiction titles here, what would you like to see next? Would you prefer to see me move into other fiction topics, or would you like reviews of more fertility-related books from the non-fiction category? I want to provide a valuable resource here, so please let me know what you would like to read! I'm always looking for great Christian titles to share with my friends, so if you can suggest other titles, please leave me a comment about the book and why it would be of interest to InfertilityMom blog readers.

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